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~Welcome New Members!~ Are you a new member? Drop on by and tell us a little bit about yourself!

Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 08-04-2009   #1
vim876
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Join Date: Aug 2009
Location: New Haven, CT and Washington, DC, USA
Posts: 3
announcement Hi
I'm Cecilia, I'm 24, and I live on the east coast of the US (I'm not trying to keep people from figuring out where I live, I'm just constantly moving back and forth between the apartment where my bf and I live, and my parents' house, which is where my doctors are.) I hope I'm not too old to post here. If I am, sorry. I only found out about EDS' existence two weeks ago. I discovered it while doing internet research after being in the ER for a dislocated shoulder and resulting bone fracture and having an doctor say "Are you sure you're not being abused? Things like this don't just happen, you know." I figured there had to be something. When I saw the symptoms of EDS hypermobility type, it was like something finally explained all those things that happened to me over the years, and I'm so relieved it isn't just in my head. My doctor said it was probably EDS, admitted not knowing much about it besides the diagnostic criteria, and he's calling a rheumatologist he knows to see if they can recommend a specialist in connective tissue disorders. Fingers crossed. Peace.
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Old 08-13-2009   #2
Chiara
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hi, nice to meet you!
glad you joined us
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Chiara, 18
EDS III type (or type I, they wonder about it)

Just Smile. ....and Always Stay Positive! Just think that life could be your worst enemy or your best love, it's up to you. And also the worst ailment could have its positive side.

I am a Hippie!!!
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Old 08-13-2009   #3
Katherine
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Hey
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22
Vascular EDS
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Old 08-13-2009   #4
SophieeBabessxo
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Hiyaaa
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Ehlers-Danlos Syndrome Hypermobility
Caffeine intolerance

Feel free to chat!
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Old 09-25-2009   #5
ReineDeLaSeine14
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Welcome!
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Old 10-26-2009   #6
xxBrittany
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Hello!
My name is Brittany, and I am one of the administrators/co-founders here at EDSkids, and my business partner Gwen (Sunsetparadise19), is also the other administrator/co-founder here at EDSkids. So if you ever need anything, please don't hesitate to ask one or both of us!

Also, I am not sure where on the east coast you live, but here in Maryland in Baltimore I go to a doctor named, Dr. Howard Levy. He is a geneticist, and very blunt but thorough on the things he tells you.
Don't know if that helps you at all, or how far you are willing to travel, but if you would like a phone number or any other information, private message me!

Thanks for joining us! And hope you are having a good day! Hugs & Spoons!
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Brittany Lynn
Stay Strong.


I am a site administrator and if you ever need anything please feel free to contact me.

"some of us are just trying to get through the day without falling apart."


A good friend is a connection to life - A tie to the past, a road to the future, the key to sanity in a totally insane world.
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Old 01-29-2010   #7
ReineDeLaSeine14
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I made a trek to Maryland myself from CT to see Dr. Clair Francomano who really changed the way I saw my care

Welcome again!
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Old 01-30-2010   #8
SunsetParadise19
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Welcome!
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Gwendolyn
*21 years old*

EDS (Hypermobility and Classical), POTS, NCS, CFS, IBS, GERD, Fibromyalgia, a sliding hiatal hernia, Depression, Gastroparisis
I am beginning to learn that it is the sweet, simple things of life which are the real ones after all.
~Laura Ingalls Wilder

 The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.
~Helen Keller
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Old 02-04-2010   #9
trevorlawrence
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Hi All,


Just wanted to Stop in to say hi and also to introduce myself here! The Boards look extremely interesting and I cant wait to become a member of the community!


The main reason to join here is to get some assistance on medication and depression problems which my loved ones are facing.


Thanks,
Trevor.
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Old 02-05-2010   #10
ReineDeLaSeine14
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Welcome Trevor! Do any of your family members have EDS?
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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